It’s a funny thing about life. No matter how old you get, sometimes life just kicks you down and you just want your Mom. I was having one of those moments yesterday. I was wallowing in my head for a lot of reasons. I tried hard all weekend to shake this feeling but it just kept getting worse.
I actually thought about calling Mom at one point late Saturday but stopped myself thinking, no, that’s just going to frustrate me even more….Mom won’t totally understand….I’ll have to explain everything even more….because she isn’t going to understand and I’ll have to explain everything even more…and then I’ll get more frustrated…and be more upset than when I started….so I didn’t call.
Then I got to Sunday and I was going over everything in my head and just decided in basic words- screw it, I’m gonna call Mom. Maybe it will be a disaster but maybe I’ll be surprised. Well I was not only surprised, I felt quite a bit better after the phone call. There were some tears, there was Mom’s understanding voice and the bottom line is that there is something about sharing your feelings, your true honest feelings with your Mom- no one understands quite like your Mom.
I don’t do it often and I have learned to problem solve and mentally triage issues more on my own given where Mom is at and where I am at- plus to be honest, some of the issues I face involve the changing dynamic of Mom in my life because of her MS.
But I realized something, Mom may not be able to walk, stand or hold herself up, she may not be able to do the things with me that she once could but no matter what MS does to her, sometimes I just need my Mom.
Have you ever had a dilemma you can’t solve immediately except with time? Have you ever had the same thoughts swirling around but can’t seem to shake them? Have you ever just quite frankly needed your Mom?
We got Mom an iPhone for Christmas and it has been a hilarious undertaking trying to explain how to use it…especially via long distance. She’s got the phone and texting parts down but when it comes to fancier things, Sister K and I must take a “patience pill” before we start explaining.
The best thing about Mom getting an iPhone has been the addition of group text messages into our life. Sister K and I have had to learn to slow down our thoughts because Mom can’t keep up…slow down. Seems to be a growing theme with all things MS related. Another post for another day.
Last night, somehow, Mom managed to take a “selfie video” (as she called it) of herself watching the Oscars and of the decorations in her room at her rehab place courtesy of Sister K. It was a silly video but you could tell she was really trying to capture everything in and was so proud of it. She also said if we share the video we are dead…so unfortunately I won’t be sharing.
Sister K was the one who guided her through how to send it to us via text. Sister K seems to be better at explaining these technology things to Mom. I think I get overwhelmed and don’t even know where to begin with teaching her how to do it…it is probably because Sister K is a teacher and naturally thinks in teaching ways. I think big picture, I am overwhelmed and Sister K just dives in…although there are times when we flip roles and it is the reverse of this between us.
Regardless, it was a cute video and it was sweet to see Mom being so proud of what may seem like a little accomplishment to many. It is also another example of the power of technology in keeping people connected…I think people forget that many of these connections could be happening in hospital rooms/rehab rooms with people away from family all over the country. The video also made me smile when I watched it last night…and it just made me sit back and smile as I just watched it again…not for the content but for a Monday smile.
I hope something crosses your path today no matter how simple or silly it may seem that makes you smile too.
I don’t like change. This isn’t really some new revelation to me and it is also not a secret confession. I don’t like change. I get a lot of it thrown at me it seems and I really don’t like it. It is such a normal statement for me to make that I even made it while chatting with my boss at lunch today while we were talking about our lives. I don’t even remember specifically what we were saying but I said, “Yeah well it makes sense because I don’t like change.”
She laughed and said well that’s funny because you are in PR. And we moved on to talking about other things. But the comment hasn’t left me all day because it’s true- I work in public relations- a career that no two days are alike, I never know what will be thrown at me when I walk into my office in the morning or even the second half of the day. The media could call, I could need to pitch a story, a crisis could occur…there is a constant unknown and that means a constant ability to change.
Yet I don’t like change.
It never and I do mean never occurred to me that the career path I have chosen for myself is in direct conflict with who I am deep down. Or is it who I am deep down? Do I really dislike change as much as I think I do? Do I really struggle with it as much as I think I do? Because I do really well at work. I do really well with the thrill of all of suddenly being thrown the impossible and making it possible. It’s a stressful period while I am making it happen but once I do, it is a complete rush.
It’s just got me thinking. They say opposites attract when it comes to significant others, but do you think opposites ever attract when it comes to a career? Is my work persona who I really want to be in my personal life…or is it who I already am, I just need to realize it?
Lots of questions here today but definitely no answers. I do think the thought and connection has entered my head for a reason…now I just need to figure out that reason.
Have you ever worked in a job or volunteer position that requires skills that are opposite of your personality? Do you think we are ever drawn to tasks that are opposite of what we think we would really prefer? Do you ever think we believe our personality traits are one way, yet really they are another?
Is there a way to walk your Mom with MS into a social gathering and not be the center of attention amongst friends? Or is this just something that is going to come with the territory now? It is something I am sitting here wondering today after a wedding this past weekend.
Halfway through, Mom needed to move from the table to her wheelchair to go to the restroom. So people gathered to help but really we didn’t need it. And the extra people just stared. Finally Dad said, why don’t ya’ll go dance or something and they quickly walked away.
Later Sister K took Mom into the restroom and after being gone for awhile I went in to help out. But people wondered where we were. Our absence created attention.
People wanted to ask Sister K, Dad and Me how Mom was- and that created attention. For the first time though, that part didn’t bother me. Maybe you could call it growth…but I didn’t get angry or irritated. I talked honestly to two of Mom’s close friends and one of their daughters. And they listened. They heard what I had to say- they admitted it is a lot for Sister K and I to be dealing with, they expressed they are worried, they wondered if there was more to be done, and I listened and I answered…I was honest.
But now today I can’t help but wonder if I shouldn’t have said anything at all. My family is a tight circle and a quiet bunch..and we are getting quieter as far as Mom’s MS is concerned. But at the same time, MS is not exactly a disease you can keep quiet- especially when people witness the changes in Mom with their own eyes and how those changes seem bigger every time they see her. So what do you do? What do you say? These friends of Mom’s are close to her and important to her, therefore it gets sticky. I don’t walk around telling anyone and everyone- and sometimes I don’t believe people’s intentions for wanting to know are good. But in this case I did.
So I struggle with how much do you say/how much do you reveal. Dad has said he doesn’t want Mom to be stuck at home forever…but if we are going to do things where we take Mom to events like this are we then also opening ourselves up for questions. Maybe we invite it upon ourselves. I am not sure exactly.
Does your family have any similar experiences with this or do you think it could just be a symptom of my family? Is it possible to hide what is really happening with a progressive version of MS or are people just going to ask questions? Do we possibly just need to understand this is what comes with the territory of taking Mom out considering the stage her MS is in currently?
Mom is undergoing a steroid infusion this week. Every evening someone from home healthcare has been coming to our house to give Mom an infusion. Becuase of her decline the past few weeks, her physical therapist thought she may be having an MS exacerbation. My parents quickly made an appointment with her doctor who prescribed the steroid infusion to get her strength back.
I have to be honest, I didn’t think much of this. I didn’t think this would really make much of a difference and had started trying to reason my way through the changes in Mom. I am continuing to do this. But something strange happened this week- the steroid infusion began and I have felt through phone calls with Mom that her presence and spirit are back.
Today at lunch I was going to go run some errands and just called to check on her really quick. Really quick turned into 45 minutes….she was so tuned in, talkative and upbeat that I couldn’t bring myself to get off the phone. I soaked up every one of those minutes as I wandered around outside. We talked about the same things, she was rambling repeated comments a few times but I really didn’t care. It was just so nice to be able to talk to Mom…really talk. She wasn’t loopy or tired or out of it. She was Mom.
I know this may not last. I am very aware that this is most likely a result of the steroid in her body right now. But I also don’t care. I enjoyed this afternoon so much and felt so revived coming back for the second half of my day. It all ties back into living in the moment with Mom. I have been having tough moments the past few weeks. But today was a good one. It was one that I want to cherish.
I am heading home this evening to actually see Mom and Dad. Husband and I are attending a wedding with them tomorrow and then I will be staying there until Wednesday morning because Dad has to go out of town. He likes for either Sister K or I to stay with Mom if he is traveling overnight. I know we most likely won’t be able to do this forever but for right now we are both in situations that allow us to, so we do. It will be nice to be home and nice to spend some more time with Mom. More time working on my patience and working on living in the moment. Hope you have a great weekend!
Maybe I am naive but I really thought finding a way to deal with Mom’s MS would get easier. She has had it for 3 1/2 years, I have seen the highs and lows firsthand and I thought at some point my mind and my heart would find a way to kick it into gear with coping mechanisms. For awhile I felt that was the case. Now I not only feel like I am struggling with coping, I am not even sure how I can cope.
I went home this past weekend with Husband to attend a wedding of a childhood family friend of ours. We only went for one night, Saturday to Sunday, but by the time I left I felt like I had been home for much longer. I was really struggling with Mom and where she is at right now. She is on some very strong medicines which I think are messing with her mind combined with increased physical difficulty over the past few months. But for some reason, even knowing all of this going into the weekend, it was rough for me.
I had trouble carrying on full conversations with Mom where she was fully present and interacting. I felt like as long as we were being silly or laughing things were fine but if we shifted the conversation to something more serious or stimulating she couldn’t contribute. I struggled with having Husband there through all of this. I felt like I was half hosting him at our house and half dealing with my emotions about Mom secretly. In a way maybe I was trying to mask certain things because I know they are there but having Husband notice them makes them more real. It was overwhelming and tough.
I got in the car with Husband to drive back and I cried. I just wanted to cry. I felt like the woman I had just spent the past 48 hours with, the woman who is Mom was not Mom. With all the changes that have occurred with Mom throughout the course of this, the one that I am struggling with the most is clearly the cognitive changes. I believe all of this may be part cognitive changes but also part medicine side effects. Regardless, it doesn’t change the situation I am left with- I am left with a Mom who isn’t quite herself. In a situation where communicating is one of the few things we have left and we are now struggling with that…I feel very helpless. I feel overwhelmingly sad. I feel like no one can understand. Even Dad and Sister K do not seem as affected or bothered by this as I do. For Dad in many ways he cannot allow this to effect him because he is Mom’s full-time care taker. For Sister K, we are different people who handle situations like this differently. At the end of the day though I am left feeling very alone and trying to find a way to cope. And I am coming up empty-handed.
Do you struggle more seeing family members lose physical or cognitive abilities? Do you believe we ever truly cope with a situation or do we learn to mask our emotions? Do you ever wonder why some people have a harder time coping with tough times like this than others?
It’s been a strange week of talking to Dad on the phone about MS, Mom, how we are dealing with it, how we are handling it. There is a lot of frustration, a lot of questions, a lot of sadness. I think the main question that keeps coming up is “Why?” Why is this happening to us? Why was our family chosen to deal with this? Why doesn’t Mom want to try harder to fight this? Why can’t Mom improve like other people we hear about who have MS? Why is this so hard on my parents? Why does Dad have to be dealing with this along with everything else? Why.
We want to know why because this journey we are on with MS is painful. It is painful to watch and painful to live. Today was painful. I called Mom as I usually do on my lunch break around noon and she answered. She sounded a little out of it. I tried carrying on a conversation with her but felt like I couldn’t get her to focus. She asked me a question or two but I knew she wasn’t really listening to my response. Twice I couldn’t even understand what she was saying because her words almost sounded slurred. She said she was laying down and it seemed like she was literally dozing off- so I got off the phone. The conversation hurt me. It hurt me because it shines a bright reality light into my eyes that Mom very much has MS and she is actually not getting better. It’s easier for me to not focus on MS when I can call Mom and we can chat somewhat normally…when she is having a good day. But today was not a good day and with that comes the reminder of the pain of this disease for all of us. Mom is changing. It is reality.
I called Sister K to tell her about this and Sister K told me she was sorry and that Mom was probably tired. She seemed a bit frustrated because she felt I was seeking more of a response from her…I honestly wasn’t. But when I got off the phone I was left wondering what did I want? Why had I called Sister K to share this with her? She can’t fix it and make it go away…did I secretly want her to? Or did I just want to tell someone what had happened because I felt sad. I didn’t feel angry; I wasn’t asking why me; I just felt sad.
It is one thing to talk to Dad about Mom’s decline but it is another to experience it. It feels even bigger to experience it all alone on the phone. I was surrounded by people walking on the streets, yet I felt all alone. I think the person I really wanted to talk to was Mom and I was painfully realizing in many ways, at that moment, she wasn’t there.
Have you ever been surrounded by people yet feel all alone? Have you ever called someone after something tough but not really understanding why you called them at all? Do you experience moments where the light of a reality you try to conquer is shined brightly in your face?
I know I am about to sound like a broken record. To be honest I feel like a broken record. I feel like this is the same thing I have blogged about a hundred times. The same issue my family has been dealing with and we continue to be dealing with..we aren’t going anywhere with it and pretty much staying in the same spot. You are probably just as frustrated hearing about it as I am talking about it. But I have to talk about it. I have to because that is what this blog is for me- it’s where I talk about Mom’s MS, the issues that result from it and sometimes it is the exact same issue but a new day.
Sister K called me this afternoon to tell me Dad was frustrated once more with Mom and her lack of initiative regarding her MS. Their new therapist suggested Mom look into juice drinks that you would make in the blender to help with her spasms. Dad thinks that turned Mom off and she told Dad she didn’t think their therapist needed to come every week. Dad listened and rescheduled for 2 weeks from now. The problem with this is Dad listened and is giving Mom what she wants.Dad had a frustrating night with Mom needing him periodically. We have talked to Dad about getting some outside help. Dad didn’t listen and hasn’t acted on this issue.
Dad then vented to Sister K about all of this. Dad did the same thing with me a few weeks ago. Sister K and I are a bit dumbfounded by the entire thing thinking we don’t know what else to say or do. We realize we are in a tricky spot. Dad doesn’t have much family to talk share this with so we are pretty much it. We don’t want to discourage him from talking to us but we are also at a loss for words or advice. We feel we have given all the advice or suggestions we can and he is the only one who can choose to act on them. It is also difficult because one week Dad is optimistic and a few weeks later he is the polar opposite. It puts Sister K and I on a bit of an emotional roller coaster, unsure of when it will stop.
Part of this may be that the relationship between Dad and Mom is husband and wife. It may be Dad admitting to himself what is happening just as much as Mom needs to admit what is happening to herself. I am not sure what needs to happen or what to even say. But I do know I am seeing the same themes consistently appearing lately. I realize this isn’t a more unique topic or unique situation. It is the same issue I have talked about many times before. But it is an issue that I need to talk about. So here I am. Trying to find a way to deal with this and realizing I still don’t have the answer or the power to do so.
Have you ever had an issue come up repeatedly in your own life that makes you feel like a broken record? Do you believe in the concept that when something gets bad enough people will change? Have you ever had a situation where a caretaker is having trouble but won’t seek the help they need? Do you even understand the phrase “broken record” because I am not sure I do?
I have mentioned Mom and I are watching Dancing With The Stars this season…together but not physically together. Sister K is sort of watching as well but her participation is weakening. Dad is pretty much a “no show” at all times. But Mom and I- we are hard core.
Today I called Mom at lunch and wasn’t really sure what to talk about. So I just started talking about Dancing With The Stars. Did you watch last night? What did you think? Who do you like? Then we quickly got off the phone. It was quick and mindless but it was important. It was important because we were talking about a topic that had nothing to do with either of our lives but it was something we had in common. It had nothing to do with MS and nothing to do with my life. It wasn’t depressing but uplifting. It wasn’t deep but light.
Sometimes Mom and I struggle with the serious conversations. We struggle with discussing stories that require deep thought and analysis. This is kind of tough for me. It continues to be tough for me because it’s part of the changing nature of our relationship because of MS. I believe what Mom desires is to keep things light. Dancing With The Stars gives me some easy help in this department. It provides me with not only a light topic to talk about, but it is a light topic I enjoy talking about. I know it may not make a lot of sense but to someone who is looking for stable similarities in a relationship that is full of constantly evolving differences…this is important to me, important to us.
Do you have any easy/light conversation topics you rely on? Do you believe TV isn’t the all powerful evil force it is made out to be but can sometimes bring people together? Have you been watching Dancing With The Stars?